What Do Patients Want? MERUK Speaks

MERUK (formerly MERGE) as one of my favorite organizations. Recently Dr. Abbott gave a talk regarding what patients want. Some of the parts that caught my eye are included below

Less psychosocial emphasis

it's important to point out that the strategies which it used - cognitive behavioural therapy (CBT) and graded exercise therapy (GET) - are applicable to all illnesses and are therefore not specific to ME/CFS; are used to "manage" symptoms but are not generally thought to be curative per se; and that while the "biopsychosocial" side dominates treatment and research in the UK, its influence is considerably less in the USA where research interest is most intense

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CBT is a kind of general purpose therapy for dealing with symptoms more effectively but only in chronic fatigue syndrome is the case made that it's curative. Just by and by how ironic it is that the home of the dreaded CFS moniker - the US - leads the world in physiological research, while the birthplace of ME - the UK - is solely focused on behavioral techniques.

Dr. Abbot notes that ME/CFS patients aren't asking for all the research money should be spent on physiological research just a fair proportion of it. This illustrates how tough things are in the UK.

The first import point to note is that the great bulk (68.4%) of all grant spend for all illnesses is to the left of the Kite, i.e. is spent on "aetiology" (research into the risk or cause and development of ill health and diseases) or "underpinning" (research into understanding normal processes and functioning, forming the basis for subsequent investigations) - so the type and distribution of funding that ME/CFS patients want to see is actually the "norm" looking at the global spend in the UK.

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He then goes through a plethora of intriguing research areas; mitochondria, brain/central nervous system, immune system, vascular system etc.

Then he illustrates what a 'big' disease ME/CFS is relative to other diseases that have less impact yet get enormously more funding. I think facts like this need to be hammered home more and more.

To give an example, the absolute number of MEDLINE-listed articles over the past 10 years for the broad subject area "schizophrenia" is approximately 32,800; for "rheumatoid arthritis" 32,000; for "multiple sclerosis" 20,000 - and for ME and CFS together 2500. The discrepancy between the size of the scientific literatures on MS and ME/CFS is even more striking when you consider that the prevalence of MS is between one third and one half that of ME/CFS. Put another way, if ME/CFS elicited the same level of scientific interest as MS, there would have been around 30,000 to 40,000 MEDLINE-listed articles in the past decade instead of the 2500 in actuality.

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Then two heartbreaking examples: studies that worked out; i.e. were successful yet were never followed up on. They boggle the mind - what more did the funders want? The study actually worked - it opened up new ground. These in my mind are tragedies - and there are more of them.

Two simple examples, from the early 1990s, illustrate the point. In the first (Costa et al 1995), blood flow at the brain stem of 43 ME/CFS patients was found to be significantly lower than in healthy controls (p<0.0001) and patients with major depression (p<0.005); a fascinating result which might have clinical significance, but which has never been reproduced with equivalent methodology. In the second (Abbot et al 1994) ME/CFS patients were found to have higher blood levels of CD8, CD38 T cells (markers of immune activation) than controls, and (unexpectedly) there was a strongly positive relationship [SLIDE] between activation markers from patients and their close family contacts. Could it be that an infectious agent affects both patients and household contacts but causes symptoms only in patients, or is the relationship entirely innocent? No-one knows, since follow-on work by independent groups has never been done.

Then he illustrates what a 'big' disease ME/CFS is relative to other diseases that have less impact yet get enormously more funding. I think facts like this need to be hammered home more and more.

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ABSOLUTELY! I think the point you make often that the real $$ is at the NIH is so important. While I appreciate ME/CFS patients may focus their distress at the CDC as they seem to be proactively harming us (i.e. Empirical Definition), the lack of action on the part of the NIH is not a benign thing. It too actively harms us.

I would also combine the money issue with Mary Schweitzer's post at Co-Cure recently pointing out how researchers are not reading each other's research. Last year when there was a study that came out showing gait abnormalities in ME/CFS patients, I went to look it up on PubMed to write about it and found three other studies from the 1990s showing the same damn thing that had not even been mentioned. How many times do they have to reinvent the wheel?

What do I want? I want more money for research. I want, as Dr. Abbott points out, that money to be spent proportionately the same way it is with other diseases. And I want researchers to actually read, damnit! In the social sciences you have to be well read in your field before you ever start doing research and I suspect the same is true in the physical sciences. Is it that hard for ME/CFS researches to do a freeking PubMed search?!

I may just be politically obtuse (and I am) or it may be the ol' CFS brain that gets in my way but I do NOT understand why CFS/CFIDS/ME gets this shunning treatment in the medical/research/funding worlds.

The NIH is a BIGGER problem than the CDC, I believe, because it is our real institution; bigger budget - all focused on research and we're down to $3,000,000 a year there - lower, much lower than it was 10 years ago!

There are several problems; here are some

the review committees at the NIH rarely have CFS researchers on board and often don't know anything about the disease so they reject reject reject proposals.

Young researchers are afraid to do CFS research because they're trying to establish a career and there is no career in CFS research.

Most of the research community believes CFS is a joke. The definition is terrible and it probably allows all sorts of subsets into studies which makes proving anything difficult - yet the CDC has done almost no work on finding subsets.

nobody knows what CFS is; is it an immune disease? a brain disorder? a behavioral disorder? it is difficult to put ME/CFS in a category - therefore there is no Institute at the NIH that is willing to take it on. So it's stranded in a small office and has no budget and no influence.

we have a debilitated and mostly splintered community that has never engaged in much active advocacy so things drift at the NIH and CDC according to the whim's of those agencies